breath_seeker

Thu, 04 Sep 2008 03:38:47 GMT

Dear CoverGirl,

Your waterproof mascara....
Does not stand up to the maid of the mist at niagra falls, yet you won't come off in the shower.. Rethink your priorities..
-Kina

P.S. I was full of the fail for even being silly enough the actually wear mascara today. I never wear it, and I don't know why I did today...

The mascara fails, so does my common sense.

Mon, 18 Aug 2008 15:20:06 GMT

To whomever is using Stephanie's cfkitty's pics, as your own, to claim you have CF and a double lung transplant...

I found out.

You use this pic..

I found out.

1. That pic is Pre-transplant with her friend..
2. She passed away, and you are disrespecting someone who died with honor.
3. That's sick..
4. You are pissing off a tight knit community of people, and we will stop this.
5. You're making her name relive that nightmare again, and that, is something worse than a lot of stuff I have seen pulled on the net..

Karma will bite you in the rear.

That is all..

Thu, 14 Aug 2008 16:03:21 GMT

Oi....

Some people are pretty ignorant when it comes to their health. I wish some people would realize taking care of themselves isn't that hard, when they don't have a serious illness... *eye roll*

They gripe about having to take a multi-vitamin or, even having to take an anti-biotic for a week to clear something up.

They'd have a cow in my shoes.. Yes, they would.

Or even this..

"Well I am not used to being sick..."

How does being sick have anything to with simple thing like getting something wrong with you checked out???

I remember I fought tooth and claw to get someone I was in a relationship with to stop smoking....
They saw what I have gone through. They knew it would hurt me by them smoking.. Yet, they still did it...

Their excuse.. "I'm stressed.."

Ah, well the stress will increase ten-fold as I walk away.. My health and happiness are more important than your habits, ignorance, and stupidity.

*shrugs*

It's simple people. Care for yourself. If you smoke, I don't want to hear you bitch about a cough. Because I'll just look at you and go.. "You chose it."

If you consume something unhealthy, and you feel like crap.. Don't come crying to me, because you knew it was bad for you. Your stupid decisions, don't need to make everyone else suffer. Seriously...

Mreh. I was just thinking about things, and spoke to someone not long ago.. And yea. I have been through enough crap with people, to not care anymore. I used to let myself get so caught up in trying to help people, when they obviously don't care.

I don't... I don't care, if you don't care. I try.. And try. But after fighting with someone, it's not worth it. They can ruin their own lives.

Mon, 11 Aug 2008 18:41:04 GMT

My allergies are eating me alive. lol

Benedryl just knocks me out. Ahhh.. So I take half a tablet to balance.

I will find a new doc down here in Pittsburgh soon, and get things taken care of.

Fri, 08 Aug 2008 03:06:59 GMT

http://www.transplantfund.org/Restricted/patient-detail.cfm?pat_id=2528

Please help in any way possible. :)

Sat, 02 Aug 2008 00:23:06 GMT

I am finally rid of that chest cold. I got rid of it faster than I thought I would. Which makes me happy! My spirometer numbers are perfect, and I am feeling great once again.

I am getting cluster migraines a lot though. o_O

Fri, 01 Aug 2008 01:13:22 GMT

Kidney Stone: Passed
Pelvis: Healing/ no longer in horrid pain
UTI: cleared

I am doing good! I feel amazing! And I am settling into Pittsburgh quite comfortably! ^_^

I have a new kitten! Her name is Naomi! She is a little calico! And right now she is batting at Kitty's ashes that I wear around my neck. XD

Mon, 28 Jul 2008 22:37:34 GMT

Well this entry is to talk about my weight and health... Oddly.

I have times where I am insecure, and then times where I am, I AM HOT BITCHES!

Well I was always trying to hide in hoodies after my surgery in July last year. It ruined my abdominal muscles. I had to wait a long time, to even start to do situps and such to get my tummy back into my hands.

I spent months, miserabele. Hiding in baggy shirts. And if I even wore a shirt remotely tight. I was asked, when I was due. After many many people asking, I just played along. It was harder to just say, "Oh I'm sorry, I'm sterile. No kids. Oh and I had my gut ripped open due to my Cystic Fibrosis causing intestinal issues." Then I'd get the question, "What's Cys-tec Fib-bro-sees?"

WTF people. Learn about illnesses. Seriously, I try to educate myself. I know not everyone is going to know about all illnesses I even make mistakes sometimes. I guess I am just speaking out of aggrevation.

Friends would say, "Oh Kina, you should watch what you eat, your face is getting fat, and look at that gut!" Oh dear god I wanted to dissapear then. I had twiggy legs for God's sake. Maybe, just maaaaybe you should shut up and ask whats up!

Nope, I kept my mouth shut, and then started t loath myself. I stopped modeling. I comfort ate. Or didn't eat at all. I was sick and nearly dying too.

I also lost Kitty, she passed away. So I was mind fucked and miserable as hell. I had the whole, "Wow you got transplant for what exactly?!?!" attitude.

So I began hiding from people. I started to become anti-social. I was also preparing to die. Yet again I was facing mortality. Thinking to myself that transplant was an odd way to die. Seeing as I went through hell to get another chance to live. But I also reminded myself, there was this risk going into all of this. So I kept fighting.

A summer of sheer hell. Kitty's death, sick, sick, sick, and did I mention sick?

I dissapeared off the face of the earth for two weeks after Kitty died. I pretty much slumped into a nest of stuffed animals, blankets, and pillows. I ket myself asleep a lot. Or sat on the balcony, maybe staring at everyone swimming. Oh how that sucked. Not being able to swim, from one surgery or another, or being accessed in my port. I began to become very self conciouss, and negative.. yet somehow. I hid a lot of my negativity. I had to wear that smile for everyone. I had to keep going or Kitty, and Fanni, and Eva, and myself. As I promised.

By september.. My health was shit. I went to the doc to get checked for rejection via bronch. And I had bags packed because I was running fevers, and chills, and not eating. And I was also urinating blood.

Kidney stone, major rejection, UTI...

My doc, well she came in that day after all my testing. She looks at me and tells me, I have chronic rejection. I gripped at the bed and clenched my jaw, fighting tears, and screaming. She told me I could plateau out, and survive, it wasn't the end.

But it all sounded like bull shit to me. I sat there, as I felt my blood running cold. Here it was again, my mortality creeping up on me. I alreayd felt like shit. I felt like I was dying. I sat there listening to her as tears started streaming down my face.

"Thats crap, Kitty nearly died of chronic, then got another transplant and finally died!!"

Dr. Budev winced and I could tell she was holding back tears also.

She continued to tell me, I could improve.

Never one dd I hear of anyone improving with chronic rejection. Everything hit me so hard. I felt so much anger build up. Kitty died. She fucking died of chronic. How could the doctor I trusted with my life, spoon feed me this bull shit?!

She has never lost a patient waiting for transplant. She kept me alive all summer. Something had to be bull shit eventually right?

I kept quiet as Renji came into the room. It took me a few minutes to tell him what the fuck was going on. He didn't cry, he just said, "Listen to the docs Kina.."

I felt so angry, so cold, defeated..

It took me a couple days to realize, I still could fight. Thanks to one of the volunteers at the hospital. He told me he is chronic, and said he was 10 years out. I felt calmness wash over me when he told me that.

Maybe, just maybe I could fight..

I spent two weeks, fighting infection, and getting two surgeries. I also fought rejection more with another heavy round of steroids.

I went home bitter, but ready to fight, harder than I think my body was ready to do.

I started rollarblading with atrophy, and severe pain in my chest. Jiggy put up with getting me out to excercise more. I constantly kept my body on its toes.

October rolled around. I was one year post transplant finally. I got good news that my lung function went form 32% up to 42%... et I still felt uneasy, and was still preparing for my mortality. I always have to keep that in mind.

November... lung function still improving.. 53%..

December... holy shit.. 64%

I felt more confident. And I didn't have to go back to cleveland until february, I was admitted, and bronched. I had a UTI, and a sinus infection. Freak fever..

Lung function was not tested. But I had NO REJECTION.

I was astonished.

May rolls around after a spring full of activity.

Lung function 76%.. Wow.. I rose from the ashes yet again..

32% up to 76% I increased 44%..

But after all this.. I still felt akward with my body.. I went from 110 lbs in september to 135 in may.

I was doing sit ups.. etc..

I was also trying to get rid of a flat butt, and a gut.. I did looks preggo.

June rolls around.. My tummy is flatter.. My toosh is perkier. Still have the cellulite. So I continue with legs lifts and a diet change.

Now today I am more content with my health and my body. I am still shy, and now I see my tummy will never be defined or perfecerytly flat like it used to. Thanks to the surgery and hernia.

But I am in a better spot in my life, and I am in a better relationship.

I'm getting there. I hope to improve more, or stay stable. ^_^

But what concerns me, is I was 135, now I am down to 123...

That is a 12 lb loss in like a month. o_O

I don't look bad actually. I look more defined. So, yea. o_O Dunno

I do find it hard to eat sometimes, because of my hernia, causing pain. And my stomach has been uneasy from everything that has been going on with my pelvis and kidney stones.

But I am doing awesome!

Thu, 24 Jul 2008 15:26:50 GMT

I am up in michigan visiting some friends. I am doing great! A bit sore, but I am good. My heart goes out to Eva, who is hurting right now. You'll be fine hun. I know this pain is so different than what you have ever really had to deal with.

That pain, that you're feeling right now, it is so much different than the pain of CF. But you can get through that pain. It just not pain you're used to dealing with. And I am glad it is a new pain. In time it will pass. And I know you will be ok.

I am moved to Pittsburgh now. I live with Sean, and we have a new kitten. Or I should say, we will have our new kitten togethro, once I get home with her. heh.

Yea, all is good. And i am blissful.

Fri, 18 Jul 2008 03:35:21 GMT

Another wonderful day. Another wonderful evening. I am sitting here sipping at my vanilla chai latte from Starbucks, and watching family guy, while typing this out.

I am waiting upon Sean's phone call before I slip off to bed for the night.

I am always thankful for everything I have, and for every breath I take.

Thu, 17 Jul 2008 02:05:52 GMT

I am happy.

Despite being in the hospital with a possible infection around my medport, and one in my kidney and a stone working it's way slowly down out of my kidney, I am happy.

Why do you ask?

Sean... That's why.

Sean, makes me happy, and he has brought out my giggly side, that I had tucked away. He lets me feel girly once again. And I can enjoy Autumn (my lungs) with him.

He doesn't smoke, he is always loving, and affectionate. And somehow we always find something to do, even if it's just cuddling, and poking at each other while goofing off.

Today I treated myself to a special tumbler from Starbucks. I got a vanilla chai latte. Mmmm.. Soooo good.

And I get a grande sized for the size of a tall if I refill it in that tumbler!

Awesome stuff!

I looked back on a lot of my life today. I always do, I like seeing where I am going, and where I have been. I live in Pittsburgh now, and I am quite hapy about that.

In about a year or so, I will most likely be moving to Vancouver with Sean.

He is my other half. My male counterpart. And that is a lot to say, and admit.

I love him. And I enjoy his company. And waking up to his voice, or next to him.

I am happy. I can even look up at big fluffy clouds once again, without the residual pain from Kitty's death.

He brought so much closure to me with a lot in my life.

He brought closure to Kitty's death, and that it IS OK to move on.
He also made me realize, it's ok to love.
He also made me realize, I am beautiful, no matter what.
He makes me feel needed, and loved.
He respects me.
He reminds me that I am cute, and intelligent.

I went to a VNV Nation concert back in November with Josh and Sarah. Well upon going home, a couple days or so later, I decided to go onto VNV's myspace and leave a comment on how much their show rocked! I saw Sean's pic and it perked my interest. So I clicked his name, and read some of his profile. I friended him, and he accepted the request. We've been talking about everything and anything ever since. I went through a rocky relationship while we were talking, and Sean saw me at a low, where I doubted love could exist anymore.

Then came a convention down in Pittsburgh, where he went out of his way to swing by to meet me. And we clicked. After that I went to Idaho to hang out with friends. I came home, and decided I needed to move. SO I moved in with Sean. Now Here I am, happy and content.

Sun, 13 Jul 2008 19:28:57 GMT

I just move to Pittsburgh the other day. And I'd love to be able to tell you how it is. But I just moved there. I don't have an internet connection at home yet. I am currently in the hospital getting my kidney stones checked out. Been sore and have a fever.

Sean is sitting here next to me, and he is helping me answer the millions of questions the docs are asking me.

Mon, 07 Jul 2008 09:34:44 GMT

http://www.mrsmalls.com/NewPHP/home.php?section=events&eventLink=future

Sun, 06 Jul 2008 18:35:50 GMT

I love the desert..

I love running..

I love looking at the night sky here in Idaho..

I love life..

Wed, 02 Jul 2008 20:13:50 GMT

The weather is beautiful.. I layed out in the warm sun and soft grass...

I smiled..

Wed, 02 Jul 2008 17:00:39 GMT

I am doing good! I think I have a tiny cold. Nothing too major.

My joints hurt like hell though. Yay arthritis!

I go to Idaho tomorrow to go spalunking, and to celebrate the 4th of July with my friends Zeek, and Char.

I love traveling. It keeps me in place with my thoughts. Being up in a plane.. Is amazing!

Mon, 30 Jun 2008 21:59:52 GMT

Today I am worn down so badly. I have not slept properly in weeks now. I have a migraine at the moment, and I have edema in my legs. So my joints are aching and burning.

I am physically exhausted. And now I am mentally wearing down. I need a restful day, but that is not happening anytime soon.

I go to Idaho on the second of July. Ugh, my body literally feels like there is battery acid coursing through my veins.

I tried napping earlier, and couldn't. I did wake up in a cold sweat. Because I ave so much on my mind.

I need help, I have so much I have to do, and now I am seriously out of energy.

I thought I could rest today... *face palms*

Mon, 30 Jun 2008 02:17:13 GMT

The convention was awesome!!!!!

I am so tired..

Without my transplant, I never ever would have enjoyed it. I even danced for hours upon hours, I ran everywhere I could, I chased friends around. I even went up and down 9 stories of stiars multiple times a day!

*grin*

Thu, 26 Jun 2008 18:46:45 GMT

So, I just watched a short video on Eva's lj again.

And yesterday I went to visit a few of my friends in the hospital. Dan, Connie, and Phil..

It hurt so much, to see them in there still. No transplant. It was hard to see my friends gasp for air.. Dan, I dated him when I was 17...

And he always has that spot in my heart, but because of health reasons.. We just couldn't be togethor.

I told them how amazing transplant it. How much you appreciate being able to breathe. Being able to travel.. Even sleep soundly.

Seeing the look in Connie's eyes, rendered my heart to nearly breaking. I remembered the days sitting around there, watching movies and talking.

Why can't a cure come faster? Why won't the government, finally fucking see, we are suffering, and fighting. But we are fighting a good fight. We are trying so hard....

The government, does not fund research. We raise the money to fund it.

The patients, friends and families.. They work so hard.

I felt my chest grow tight watching Dan struggle to breathe. I nearly cried, but I stopped myself, because I have been there too. I have struggled. But I just wanted to help him, to ease his pain..

I walked around the halls.. Dan even ordered chicken strips with that honey mustard for me..

I am terrified, he won't get transplant.. I am terrified of losing another friend. His brother Brian is also a friend, and he has been waiting for transplant for over a year now.

And it hurts..

I am so thankful for what I have now. Even the days where I am depressed, I know. I am lucky. Most patients, never get the chance to breathe, or experiance life.

To those of you, who have CF, and have not gotten transplant yet. Keep fighting... Just keep fighting the good fight. We are true soldiers...

Someday maybe the world will open their eyes. I am trying to make a difference... One person at a time.

Wed, 25 Jun 2008 04:43:39 GMT

Canada= WOW

Eva, is the most amazing person. She has so much life in her. She amazes me, and I look up to her.

Meeting her, just, made me feel so complete inside. A friend I have connected with so well, via livejournal. And to connect and feel like I have known them forever.. In person?

I am so happy.

We did SO MUCH, when I went up to Vancouver. I'm so tired out. lol

Here are a couple pics of the result of Eva's talent, and creativity!!

Eva designed this, and I got it tattooed on me. It didn't have the names at first, I wanted them added. This tattoo has HUGE story behind it, and so much love....

We saw wolves, went up a mountain.. Played in snow, saw a raccoon, and even ran as fast as we could across a beach...

She also came after my hair...

(ignore the exhausted face, just got home from the airport...)

It's RED!

And I love it!!!

We did so much.. And.. I really feel torn. I miss Vancouver.. I miss Eva.. I miss everyone already. I cried on the plane..

But I am planning on going back!

Sat, 21 Jun 2008 07:46:59 GMT

Canada...

Here I come.

Thu, 19 Jun 2008 23:24:03 GMT

I dyed my hair today! It looked sad, now it's bright again!!!!

I also got my bangs trimmed, I'll post those pics later.

Tue, 17 Jun 2008 02:14:12 GMT

I go to Canada saturday...

I am excited!!!!!

Sun, 15 Jun 2008 22:25:49 GMT

I have learned to cope with the heat. It's tough at times with my medications. But I manage. I am afraid of the hotter days. But I am stocked up on gatorade.

Life is going great right now! Everyday I wake up now, I wil lay there holding my breath for a moment, and then I draw in a deep breath and hold that. And then I exhale and I realize it feels so wonderful to see the sun peeking through my blinds, and feel the soft sheets against my skin.

I sit up, and reach over to the table that usually has something to drink, and all my meds set out. I take my morning medication, and I start my day, or I open my shades and just let the sun flood in, and I embrace it.

One week.. Just one week, until I get to do something exciting!

But now I must go unpack some more, and eat something. And time to take my afternoon meds!

Wed, 11 Jun 2008 21:14:41 GMT

Some tips for the Cfers out there with this odd heat..

• Wet down your hair, and wear a soaked bandana. I will wear a nice cool shirt I don't mind getting wet because the water dips down for the bandana.

• Drink plenty of fluids! (duh.)

• Some CFers need to intake sodium! Remember that! You sweat out LARGE amounts of salt!

• Rest if you need to, those lungs strain enough! it is best to work out, when you are not straining your body too hard, and risking heat exhaustion and heat stroke.

• Do use your nebulizers and inhalers religiously! It will help with those damn asthma attacks that hit because of heat and humidity!

• Stay in the Air conditioned places!! If you don't have an AC, use a cooler full of ice and place it in front of a large fan... This helps... Just call it a poor man's AC..

• Get plenty of rest!

• Get plenty of fruits and veggies in your system. And try to eat a lot of smaller meals instead of huge ones. Your body will have to break down this food! (OH AND TAKE YOUR ENZYMES!!!!)

Just take care of yourself, and you should be good!